Bryce Mathew’s Family

Erica was so excited when she found out she was pregnant. She wanted nothing more than to have a baby. “All my life I had dreamed of becoming a mother. When I met my husband I knew that we should have a family. I found out that I was pregnant on November 26th of 2003 and could not believe it. I was finally going to be a Mommy! My first trimester of pregnancy was normal, besides having the four month morning sickness that was day and night. But in my third trimester I began noticing things that were not normal; I was not as big in the stomach as many women who were as far along as I was. At first I thought I was fortunate to stay skinny but then it began to worry me. My doctor began noticing that I was not growing any more in my stomach and wanted me to have an ultrasound done. I was nervous because I knew something was wrong. I knew the baby was still alive because he was constantly moving and I had several ultrasounds including a 4d ultrasound, which was really neat. In the 4d ultrasound you could really see Bryce and his facial features which looked just the way he did.”

They decided to have an ultrasound and find out what was wrong, but in the back of her mind Erica just knew that she was simply going to have a smaller baby than most. “I weighed just 6 pounds so I figured that my baby would be small as well.” At the time of the ultrasound, Erica was in her 8th month. By this time most average babies are about 6 pounds and during the ultrasound they said Bryce was just 3.2 pounds. “I could not believe it. Why was my baby so small? I ate right (actually I ate everything in sight). I took good care of myself, I exercised, I never smoked or did drugs and I did not drink alcohol. So why was my baby so small? I just cried through the rest of the ultrasound.”

Erica was referred to a more advanced hospital that specialized in pregnancy complications. On July 12th of 2003 they had an amnio. During the amnio, they performed an ultrasound and found that Bryce also had a short femur bone which is a marker for Down syndrome. “I was devastated now because I could not believe that my baby could have Down syndrome and they explained to us about Down’s, Trisomy 18 and Trisomy 13. I just knew that my baby could not have any of these disorders… but I was wrong. I went back home and waited impatiently for the results for the amnio, which usually took around 10 days. I had taken the triple screen in the beginning of my pregnancy and it was negative for all chromosome defects including Trisomy 18. So I just knew that it could not be a chromosome problem.”

On July 20th, Erica went into the hospital for a doctor’s appointment with her regular OB/GYN. He wanted to perform another amnio because he would like to deliver early. It was apparent that the baby had stopped growing and now he was checking for lung maturity. “The amnio he performed was very very painful and put me and the baby under a lot of stress. The baby’s heart rate would not level out and stayed at 60 beats per minute after the amnio, which is extremely low. So they sent me to the labor room to be monitored for a while until his heart rate got back to normal. It never did, it just kept dropping. So my doctor rushed in and asked me what I thought about an emergency C-section. I was petrified. My mother was with me but that was all because we were just at the hospital for a doctor’s appointment, not to have a baby. But things happen when you least expect them! While my mom was calling my husband and all my family, I was being prepped for surgery. I was so scared because I did not want a c-section but I was more scared for Bryce because I knew something was wrong and I wanted him to be ok.”

Erica shares the story of Bryce’s birth. “They began the surgery without my husband because he could not get there in time. I remember when they pulled Bryce out, he was not breathing so they had to rub him a lot and then I heard him cry. They kept saying that he was small and still I had no idea that he had Trisomy 18. While I was waiting in the holding room my husband came in and he had been crying and I asked him what was wrong with Bryce and he didn’t say anything but I knew something was wrong. No one would tell me what was wrong with my son and I was getting upset because I could tell by the way everyone was acting that something was wrong.”

“When we got back to my room a pediatrician came in and informed me that my son had Trisomy 18. I lost it and began crying. My little boy that I had dreamed of and had worked so hard for was going to die and there was nothing anyone could do. I felt like I had failed as a parent because it was my job to protect him and I could not do even that. Bryce was born around 4:00 in the afternoon and they would not let me see him because I had to lay flat on my back due to a spinal headache. Bryce was in the NICU, on only oxygen.”

“That night was hard because I wanted to see him but I could not. The doctors and my family informed me that he was missing his left eye. Other than that they said he looked perfectly normal. They brought me pictures of him and I thought he was beautiful, I was still praying for a misdiagnosis. The doctors informed me that he would never leave the hospital and most likely die by the end of the week; they also said he would be on all kinds of machines to keep him alive. So far he was only on oxygen. They also told me that he would never eat on his own. I went to bed that night wondering if I would ever see my baby or if he would die that night.”

“The next day was so much better than the day before, because I got to see my precious baby boy. He weighed 3 pounds and 12 ounces and was 16? inches long. He was so tiny but he looked beautiful and he looked like a normal small baby. The first time I held him I cried and cried. He was now off of his oxygen and even eating on his own. So I thought if the doctors were wrong about this, maybe they were wrong about his condition. Maybe he would beat all odds and live longer.”

Bryce did beat the odds. “We got to take him home 3 days later and he was perfect when we left the hospital, he had an EKG on his heart and it said he had a VSD. The pediatrician said it would probably cause no problem for him until he got older. I was so happy when we left because I thought if we could beat the odds of leaving the hospital than we could defiantly beat all the other odds. But I was again wrong and Bryce slowly began to get worse and worse. At first Bryce was a fighter; he was very active and constantly moved and kicked. He really had a temper and would throw fits especially during his bath. He had severe constipation and we had to give him baby enemas every three days because he could not have a bowel movement on his own. He was never on any machines and always ate on his own. My family loved him and came by all the time to see him. He was the first grandchild and great grandchild on my side. He was a much loved boy! We decorated his room in planes and trains and automobiles and painted it red, yellow and blue. He had a beautiful round cherry wood crib but he never slept in it because I let him sleep with me. I was too scared that he would have apnea and forget to breathe.”

“On August 30th our little boy finally passed away around 12 pm. We watched him struggle to take his last breaths. We decided not to have him hooked up to all the machines that just keep him barely alive. We didn’t want that for him. I held him in my arms along with my mother, husband, his mother, my stepfather and Bryce’s hospice nurse. He is now in heaven with God and is no pain. I know now that God gave him to us for a reason and that is because he wanted us to become better people so we could go to heaven and now we have someone waiting there for us. That is all the motivation I need to be a better person. I look at people from a whole new perspective. I don’t look at their faults and what might be different about them because I know what it is like to have a child who is different. I miss him every minute of every day and each day it gets harder, not easier, because it’s one more day that I am without him. But also it’s one more day that I am closer to seeing him. I still get a little jealous when I see mothers who take for granted what wonderful healthy children they have. Some abuse and neglect them and I would give anything to have my son back and healthy. I know many say life is not fair and I would have to agree but I do believe that all things happen for a reason. We may not know that reason but one day we will. Until I know that reason, I will wait here on earth until I see my sweet baby boy again in heaven.”

Disclaimer: The content of this page does not reflect the views of the Trisomy 18 Foundation. The Trisomy 18 Foundation offers this space to parents as part of the Support Program. Parents have control over how they tell their child's story as well as which pictures they feel comfortable sharing with the Community.